what I want you to know: ocular albinism

What I Want You to Know is a seriesof reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s post is by Sarah DeNike of www.thewilltosee.com.

What I want you to know is that it is hard to have kids that are not quite “normal.” I am Sarah and have 2 beautiful little boys, Jackson age 6 and William age 22 months. Both my boys have Ocular Albinism, a rare (1 in 17,000) condition that affects their retina, how well they see, visual acuity and depth perception.
Our story actually begins not with eyes but with eating. When Jackson was 2.5 weeks old he was diagnosed with severe reflux and milk protein intolerance. We spent the next 4 months fighting to get him to take a bottle, finally giving up and putting in an NG-tube, a tube down his nose. Eight months later we moved the tube to his abdomen so he could be a “normal” toddler. He was completely tube fed until he was 2.5 years old. To read more about that story, click here.

After our experience with Jack, we were obviously fearful that Will would have the same issues. Right after birth he was also diagnosed with milk protein intolerance, but fortunately we moved him immediately to the formula that worked for Jack. At 4.5 months old he started refusing the bottle as well. After lots of tests including an endoscopy and upper GI, we found that he needed his formula thickened and he went right back to eating. Two days later and the day before we left for my grandmother funeral we got the diagnosis from our eye doctor that Will had Ocular Albinism.

She told us that his vision could be anywhere from close to normal to legally blind. He also had a condition called nystagmus that causes his eyes to move back and forth involuntarily, which is why we went to the eye doctor in the first place. We walked in expecting to her to say that it was just nystagmus and would go away over the next couple of years. Needless to say we were devastated to be told that our beautiful 5 month old baby boy might never be able to really see. All I could think about was how much the world he would miss out on. After going to a specialist a month later we were given better news that he would probably end up with vision in the 20:50 to 20:90 range. In March the specialist examined Jack too and wondered if he too had a mild form of OA. We confirmed that diagnosis in November.

So what does this mean? It means that the boys don’t have good depth perception and will probably not play much baseball, tennis, football or other ball sports. It means that Will may never be able to drive, because it isn’t correctable with glasses. It means that they will have to sit in the front of the class and for Will the front left side of the class. It means I will have to go into every class and talk to every teacher to let them know that they boys aren’t being difficult or particular, that they have different eyes. It means they will never truly be “normal” kids.

Right after Will was diagnosed with OA most people thought “oh, it is no big deal or it is correctable with glasses.” It took a lot of explaining to get them to understand that there isn’t a cure or a fix for this. This also happened with Jack’s tube and people not understanding why he wasn’t eating and that he wasn’t just a stubborn child. People can be so quick to judge or try to minimize the problem.

When you look at them you probably wouldn’t know anything is different. Maybe with Will you would notice that he holds his head funny to look at you or walks right up to you before he recognizes you. Otherwise they look “normal.” I have learned to hate that word, because my boys haven’t ever been “normal.” I thought we were through all of the differences when we took Jack’s tube out, little did I know.

Then I walk through the doors of Children’s Hospital and feel so incredibly lucky that otherwise they are healthy. There are so many families that are dealing with bigger issues than ours. Then I go to the bus stop and see all of our friends’ children and how “normal” they are and I wonder why we got this draw.

So what I want you to know is it is hard to be not quite “normal”. They look “normal” to the naked eye, but they will always see differently. I want you to know I worry every day what Will’s life will be like and how Jack will adjust to the new understanding of his eyes. My husband and I work very hard so that they don’t think that their differences will hold them back and that have as many opportunities as possible. You can read more about us here.